How to manage Pathological Demand Avoidance (PDA)?

Firstly, what is PDA?

Shared from www.pdasociety.org.uk:

“Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas:

  • Social Communication Difficulties
  • Social Interaction Difficulties
  • Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)

In addition, the central difficulty for people with PDA is their “anxiety-driven need to be in control and avoid other people’s demands and expectations.” Understanding PDA in Children. Christie, Duncan, Fidler & Healy (2011). Furthermore, research conducted by Newcastle University in 2016 concluded that this extreme anxiety could be underpinned by an “intolerance of uncertainty”. 

So what does this mean in practical terms?

This means that your child may demonstrate extreme behaviours as a reaction to every day demands. It is not uncommon that these behaviours will include physical violence (generally on the main care giver but not exclusively), trashing the environment (upturning furniture, throwing everything and anything in sight) and explicit language.

The reason that PDA is often so difficult to manage is because one of the key features of PDA is Excessive mood swings and impulsivity’. This can mean that your child can have great difficulty in regulating their own emotions and controlling their reactions to situations and people. Your child can rapidly switch from happy and engaging – to angry or sad in seconds, often with no visible build up or warning to others. This may be in response to pressure of demands and perceived expectations’.(PDA Society)

Before you have that light bulb moment and discover that your child ticks every box for PDA, you are likely to be literally on your knees not understanding your child’s irrational and extreme behaviours! Additionally you have probably Googled every condition under the sun trying to figure out why your child is behaving in this extreme manner!

The importance of using PDA approaches over Autism (ASC) approaches!

I cannot stress enough how paramount implementing specific PDA approaches are!

The approaches for PDA are TOTALLY different to those suggested for ASD and are even indeed polar opposite! So don’t be fobbed of with being told to use approaches for Autism or to book yourself on to a parenting course!

With this in mind, it is vital that not only the parent but also others, in particularly teachers, take a PDA stance in their approach when interacting with the child.

When supporting a child with PDA, having structure, boundaries, consequences and inflexible routines will only antagonise things and is a sure way of triggering a meltdown! Our PDA children need FLEXIBILITY and need to be made to feel in control.

Prior to using PDA approaches

For us, before I started using PDA approaches and truly understanding that my daughter’s negative behaviours were being driven by anxiety and not poor behaviour, we were experiencing 4-6 massive meltdowns per day! These could and would last for hours!

A ‘meltdown’ for us would mean my daughter in great distress, screaming and shouting, me being physically attacked and injured, I would be called every expletive under the sun and the house would be trashed with many a broken item! It was nothing short of chaos!

I also remember learning the hard way that consequences DIDN’T work! For example removing my daughter’s phone as a punishment for ‘being rude’ to me, actually resulted in the situation escalating and me being physically attacked! Did the removal of her phone ‘teach’ her anything or eliminate this behaviour she was being punished for from happening again? Of course it didn’t!

Instead I had to start looking at what was causing the behaviours rather than punishing the behaviours.

Even waking her up in the morning, unbeknown to me at the time, was a DEMAND. This triggered full on meltdown on several mornings!

With mornings being so tricky at this point, it was suggested to me, by the Head of her now Specialist School, to make a visual prompt of all the things that I would like my daughter to do in the mornings ie wake up, brush teeth, get washed, get dressed etc and then allow my daughter to do these, unprompted, on her own. I remember thinking at the time that this was NEVER going to work! But do you know what, it actually did!!

In hindsight this shouldn’t have been any great surprise really as it took away all the demands that a morning routine brings and allowed her feel in total control!

The importance of using the correct terminology

Another really important thing to remember when communicating with a child with PDA is the way that you speak to them and how you word things. If worded wrongly, it will be seen as a demand or be misunderstood.

Make sure when you are wanting your child to follow instruction or do something that isn’t necessarily what they would like to do, then it’s important to phrase it in a way that makes you child feel safe and in control whilst ensuring you get the outcome you are looking for. For example, rather than saying ‘hurry up we need to go’, try ‘I’m ready to go when you are’.

It’s also good to give your child no more than two choices, any more than this is likely to be just too overwhelming for them. For example, rather than saying ‘you need to get dressed’ (DEMAND!), try ‘would you like to wear the blue t-shirt or the white t-shirt?’.

I quickly learnt that you need to pick your battles! Some things are just not worth the distress you will cause your child if you are insisting on a particular thing. I found it useful to have an internal chat with myself and actually carefully consider if THIS (whatever THIS may be) was something that really mattered? For example: would it really be the end of the world if my daughter didn’t brush her teeth that evening? If the demand was too much for her tolerance levels at that moment in that time, did is actually matter? No, it didn’t.

Approaches recommended from the PDA Society Website

Use indirect commands to disguise demands and make them fun – Try challenges e.g. “Bet I can get my coat on before you!” or “Can you show me……..”.

Sometimes, even when you don’t feel like making a game of everything, it is the important to remember that your child needs this.

Try to make them feel useful which also helps to maintain emotional well-being – e.g. “It would be really helpful if you could just……”.

Pretend you don’t know / get it wrong and ask them to teach you – e.g. Mis-read words in books, or ask them to show you how to do a certain task that you want them to do.

This is also a really helpful strategy as it demonstrates to your child that it is okay to get things wrong or make mistakes. This has been a real challenge for us as my daughter really struggles with things not being ‘perfect’.

Offer limited choices to give the child a sense of control & autonomy –  e.g.  “Do you want to have a bath or a shower tonight?” followed by “would you like to have your shower at 6.00pm or 7.00pm?” Be prepared to negotiate e.g. your child may say that they will have a shower at 6.30pm to retain a sense of control. N.B. offering too many choices or open ended choices can increase a child’s anxiety. Or use the ‘when… then’ philosophy – e.g. “when I have done my boring housework, then we can bake some cakes”.

Voice control – Use a calm, even tone of voice, especially when they are demand avoiding. If you convey anxiety, stress or anger in your tone of voice your child will pick up on this, their anxiety will increase and their tolerance for demands will decrease.

This is often one of the hardest strategies to overcome, however it is one of the most important!

Indirect praise – Praise may be perceived as a demand or an expectation to perform at the same level again. It can be helpful to give a child indirect praise e.g. talk to a relative about something good your child has done while they are in earshot – may be more easily accepted than directly praising them. Praise the object instead of the child e.g. “what an amazing picture, the colours are beautiful” instead of “you have drawn a wonderful picture”.

Use role play and props – Sometimes it can be easier and less direct to attempt communication with your child through toys and props e.g. using a cuddly toy e.g. “Teddy has asked if we can go to the shops today and if he can have an ice-cream?”. Another option can be constructing a conversation within earshot “I wonder if Ryan would like to go to the park on Saturday”. As children grow older this could involve text messages, Facebook messages, leaving notes around the house and so on.

I recall a period of time where my daughter wanted me to communicate with her as an evil Disney character and almost bark orders at her! This was a strange one as it goes against the grain of PDA approaches in one sense but then also made sense as it was using role play.

Model desirable behaviour – Reinforce acceptable, desirable and alternative behaviour in your own actions, but don’t instruct your child to do the same. It can be more productive to let them observe without the expectation that they should do this also e.g. “I feel so stressed and angry right now, so I am going to lie down in a quiet room and listen to some music to help me calm down”.

Other challenges

Sadly, often schools and other professionals aren’t on board with implementing PDA approaches and this is a massive challenge for many parents! However, don’t give up trying to educate them, you know your child best and using PDA approaches are crucial in reducing anxieties.

Parenting a PDA child is going to be one of the toughest, steepest learning curves you will probably ever experience, however if you can master the top key approaches above then you will be half way there to having a much calmer child!

If these approaches aren’t put in place then you are setting yourself up for one hell of a tough ride! Your child’s anxieties are likely to be through the roof and this will ultimately result in extreme negative behaviours.

Don’t get me wrong, it’s hard, particularly to keep your tone of voice calm and think on your feet, but you will see a dramatic improvement in your child’s behaviour. Don’t see it as ‘giving in’ or your child ‘winning’, this is not a battle, these are approaches to support your child.

PDA: My personal Top Tips

  • Grow a thick skin fast, it’s not personal!
  • Be a chief negotiator!
  • Be a master of thinking on your feet!
  • Pick your battles!
  • Don’t be afraid to be flexible! It’s not a sign of weakness!
  • Distraction and humour will become your best friends!
  • Don’t be afraid of appearing to others that you are ‘soft’ – it’s all part of the master plan!
  • Reducing anxieties = reducing meltdowns! Fact!
  • Test boundaries ie ‘traditional parenting’ ONLY when your child’s tolerance levels allow. Our children still need to learn life skills, yes, but these need to be carefully timed
  • Keep a stock of alcohol (or chocolate, whichever is your vice)….you are going to need it!
  • Create a ‘Survival Kit’

What we had in our Survival Kit!

Our survival kit was used to distract and entertain our way out of a potential situation and also as a tool to help reduce anxieties. This was particularly useful when out and about.

Our kit consisted of:

  • An Ipod and headphones
  • Ear defenders
  • Pack of Uno cards
  • Pack of Top Trumps
  • A balloon – a brilliant tool to help calm and regulate breathing! Also good for humouring purposes ie makes a great ‘farting’ noise when blown up and then released!
  • Lollipops
  • Colouring book and pens
  • Wipes – for all eventualities including sensory overload
  • Chewing gum – controversial but for us helped stave off the constant hunger!
  • ‘Chew’ toys – to ease anxieties and be a great alternative to bite rather than herself or me
  • Fidget toys  

Where to go for further information

For further information and a host of helpful resources, please visit: https://www.pdasociety.org.uk/   

I, personally, would also highly recommended the book titled: ‘Understanding Pathological Demand AvoidanceSyndrome in Children: A Guide for Parents, Teachers and Other Professionals’, written by Phil Christie, Margaret Duncan, Zara Healy and Ruth Fidler.

Remember, above all else, ‘PDA approaches NOT ASC’....

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19 Comments

  1. Caz Meech
    June 20, 2019 / 11:59 pm

    This is the most helpful blog I’ve read. Thank you for this article x

    • June 21, 2019 / 2:21 pm

      Ahh thank you so much, that’s really lovely to hear! x

  2. Jo Nye
    August 6, 2019 / 8:42 am

    Erika you are an inspiration this will help so many people. Thank you for sharing your experiences for everyone xx

    • August 10, 2019 / 6:21 pm

      Ahh thank you so much Jo, I really appreciate your kind comments xx

  3. August 6, 2019 / 5:05 pm

    Thanks I am a mother and very busy! This helped me alot!

    • August 10, 2019 / 6:20 pm

      Ahh I am pleased this has been helpful x

  4. August 8, 2019 / 1:13 am

    Great post. I was checking constantly this blog and I am impressed!
    Very helpful info particularly the last part 🙂 I care for such information a lot.
    I was looking for this particular information for a long time.
    Thank you and good luck.

  5. Rachel
    June 15, 2020 / 3:51 am

    What do you suggest for when our PDA children are disobedient or disrespectful? When they hit or harm siblings or parents, or when they destroy property, etc.? How do we discipline that? We are struggling. 🙁

    • June 15, 2020 / 8:58 am

      Hi, firstly I’m so sorry to hear you are struggling, parenting a child with PDA is tough. In answer to your question, it very much depends on when these behaviours are happening? If these are during meltdown or when your child is clearly struggling, then the simple answer is you don’t discipline these as your child is not in control of these behaviours and it is not a deliberate act of defiance. Yes, talk about the behaviours once your child is calm and look at how things could have been done differently. Have you heard of the ‘Zones of Regulation’? This is a tool that can help by putting in strategies before your child hits full blown meltdown. I only use ‘traditional’ parenting when I feel my daughter’s tolerance levels allow. I hope this helps a little xx

  6. Katy
    October 12, 2020 / 8:52 pm

    I am pretty sure my son has PDA he ticks every box, we have ended up having to take him out of school and home schooling him as school has been causing such huge anxiety with him.and they are refusing to even accept that there’s anything wrong because he us SO good at masking when he’s not with me! This post has really really helped me, and I’m so happy to see that a lot of your suggestions are things I’ve already implemented instinctively, and it’s helped get my husband on side as he couldn’t understand where I was coming from in my nicey-nicey approach but you’ve explained this so well that he’s had his very own light bulb moment tonight! We are literally at the start of our journey but reading this has been so so reassuring!

    • October 13, 2020 / 3:30 pm

      Ahh I am so so pleased to hear that this blog has helped your husband have his own light bulb moment, that’s amazing and so pleased it’s also been reassuring! Supporting/managing your child with PDA, as you know, can be extremely challenging but I am so pleased this has helped you both to be on the same page! Thank you so much for your comment, it is always really lovely to hear that what I write has been helpful to others, so thank you!

  7. Paula R.
    January 17, 2021 / 12:47 pm

    I’m also at the beginning of the PDA journey. I was ALMOST about to accept an ADHD/ ODD diagnosis but the ODD just didn’t feel right. Then I stumbled on PDA and it makes soooo much sense, from the delayed speech with quick catch up, to the “normal” but superficial peer interactions, to the extreme demand avoidance. My son also has just begun fixating negatively on people who he feels have wronged him. One question: you mentioned “constant hunger” in your blog. My son eats CONSTANTLY. We actually just started ADHD meds (possible comorbidity) which is supposed to decrease appetite and his hunger is still insatiable. Is this a symptom of PDA? Any other tips, symptoms, etc? Anything that could help make a diagnosis clearer would be super helpful!

    • January 26, 2021 / 11:11 am

      Hi, thank you for making contact. Bless you, I remember that ‘light bulb’ moment all too well! I am no psychiatrist, however just from what you say it sounds like PDA and definitely worth exploring this with professionals involved. One word of warning though, unfortunately and frustratingly not all professionals recognise PDA. With regards to your question regarding ‘hunger’, I don’t believe this to be a symptom of PDA, however it is common. Have you come across the ‘Extreme Demand Avoidance Questionnaire’? If not, this is what is used by professionals when exploring PDA. It can be found on the PDA Website (www.pdasociety.org.uk) where you can also find a host of resources. I really do wish you all the very best of luck x

  8. Sarah
    May 4, 2021 / 6:03 pm

    Thank you for such an excellent blog. It sounds just like my daughter. Only last week did a psychiatrists suggest it may be pda (she hasn’t seen my daughter but based on evidence I shared with her). And yes it is a light bulb. From having beans on toast every day after nursery school, to saying I do what I want as a phrase as a small child to a teenager now being violent to me (mother) and trashing the house. Plus needing us to be quiet when she gets up and has her breakfast and in the car after school. She didn’t present as having traditional ASD (CAHMS form based on traditional ASD says not) – but speaking to the psychiatrist and reading all these articles it all makes sense. I knew she was a good kid – but CAHMS were telling me it was behavioural. Thank goodness I didn’t follow their advice around strong boundaries.
    Now we just need to implement the strategies….. Quite hard when you have other children who do like noise and bustle! But thanks for the article. Very interesting.

    • May 6, 2021 / 11:22 am

      Ahh thank you so much for your kind words. Whilst it is a double edged sword, I’m pleased that you found my blog relatable. Thank goodness you did follow your gut instinct! Sending big, understanding, hugs to you all x

  9. Laura
    October 2, 2021 / 11:12 am

    Thanks so much for this! This is just what I needed! I can’t even tell you how much this has helped! I am off to buy that book!

    • October 2, 2021 / 12:37 pm

      Ahh you are most welcome, I’m so pleased to hear this has been helpful x

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